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Ever Decreasing Circles part three

User
Posted Tuesday, December 20, 2016 3:24:45 PM(UTC)

This is getting me so Cross now. All these entries and it shows page 11 yet puts these on page 10. Sort this out please.



MADE IT, MADE IT. MY PROPER ENTRY IS ON PAGE 10 SO HOPE YOU CAN GO BACK AND READ IT.
User
Posted Tuesday, December 20, 2016 3:56:28 PM(UTC)

I hope keep turning the page didn't tire you out Paul, you need your strength for celebrating Christmas !!

Well done on all the results.

I sincerely hope that you and yours have a joyous and joyful Christmas and I wish you the continuation of your recent improvement in health in 2017.

Best Wishes

Sandra

We can't control the winds - but we can adjust our sails
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User
Posted Tuesday, December 20, 2016 4:43:50 PM(UTC)

Great news Paul...you and Julie have cheered us all up.

Have a great Christmas.

Eleanor

x

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User
Posted Tuesday, December 20, 2016 7:26:20 PM(UTC)

Great news that seems particularly better at this time of year. I agree with Barry that you should give it the two fingers and continue this trend into 2017 and beyond.

Newbies should read your story to give them hope in those dark early days

Enjoy your Christmas break with your family Paul

Bri

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User
Posted Tuesday, December 20, 2016 8:44:13 PM(UTC)
Hi Paul,
What a lovely positive post. Am sure it will give hope to many! Wishing you a great Xmas and a very happy new year!
Lesley x
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User
Posted Tuesday, December 20, 2016 8:54:39 PM(UTC)

I had a colonoscopy recently - by far the worst experience of my life (and I have had numerous babies without pain relief so consider myself pretty tough). The taste of that awful stuff will stay with me forever :-(

But you have survived the awfulness and lived your life, squeezed in yet another trip to Hong Kong and enjoyed loads of cricket (is enjoyed the right word?) - have a wonderful Christmas my dear friend xxx

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted Tuesday, December 20, 2016 10:27:37 PM(UTC)

Brilliant news in time for Christmas :-) x

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User
Posted Wednesday, December 21, 2016 8:06:45 AM(UTC)
Lyn

Cricket is the sport of Kings. At the moment, the English team are playing like a third eleven club side but oh, the drama!
X
Bazza
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
Thanked 1 time
User
Posted Wednesday, December 21, 2016 8:35:20 AM(UTC)

I think for Paul, some of the agony has been related to the white rose of Yorks ... or his local team :-/

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Wednesday, December 21, 2016 7:59:09 PM(UTC)

I love my cricket whether it is my local club, where I am president, Yorkshire where I am a season ticket holder or the national side. I used to love playing and now love watching, whether on TV or live. I prefer quieter games to watch live. I decreasingly like big crowds and hot weather so the comfort of the sofa is better for televised international cricket. I can lose myself in cricket when other things in my life, mainly health related threaten to dominate. If you can focus on the positive in your life, somehow the difficulties seem more in perspective and not dominating. So cricket is one of my key enablers even when the wheels come off but that is sport anyway and there is always next time.

User
Posted Wednesday, December 21, 2016 9:34:32 PM(UTC)
Dah Dah and here you are on page 12 , what can I say my dear friend other than congratulations on getting to page 12. Of course the bigger CONGRTULATIONS is the PSA FAntastic news so happy for that result. I did see your leg problem on FB , also loved your photos and have just managed to catch up with your blog.
Ok so a bit of a downturn with the leg but on the flip side I think you are on the way up.
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted Friday, February 10, 2017 4:44:35 PM(UTC)

So having been through the mill with ancillary complaints and just about emerging I thought I'd update. No PCa update as another month to onco appt but symptomatically speaking it's still good. I had a colonoscopy as an early Xmas present 9gruesome preparation though the procedure itself ok) and the results have been good so no additional problems. So I have IBS as a result of the campylobacter infection which should clear over time. With occasional help from Imodium I am managing so far to avoid embarrassment when I can't get to the loo and it has begun in the last two weeks to be more manageable. This in turn has helped my diabetes which was becoming a problem. I had appointment before Christmas and my hba1C was rising and at 83. So change of meds and first injecting med now taken though not yet insulin. Of course unless the stomach settled risk that the meds would not be in the system long enough to have impact.

Anyway roll on two months and in the last fortnight had a noticeable improvement in my general bon homie evidenced by a steady improvement in my daily blood test for diabetes. Appointment today revealed in just 8 weeks hba1C down from 83 to 74. So clear improvement reflecting how I feel. Good news as insulin is around the corner.

Vitamin D very low so have to deal with that but my ancillary issues are beginning to behave again so be great it the PCa continues to sleep.

Now a quick question. I am considering an application for PIP. My walking is now very poor centred around my bone mets in my right leg which means after about 30 yards it starts hurting and only stops if I stop. So at Xmas I trialled a mobilty scooter whilst at Center Parcs. It did give me more independence and I got around so much more. If I get an assessment and it fails does that preclude a further application later on. Any advice welcome.

So trying to keep well before the PCa takes off again. Five years now so becoming a veteran at this.

User
Posted Friday, February 10, 2017 5:23:15 PM(UTC)

Oh you have had a rough time of it Paul.

Why shouldn't you apply for the PIP. Independence means so much to most people but to somebody like you, who has been used to jetting off around the world it must be very frustrating.

Go for it

We can't control the winds - but we can adjust our sails
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User
Posted Friday, February 10, 2017 8:00:12 PM(UTC)

Paul good to hear improvements in some areas. Hopefully the PSA will follow suit next month.

Been some time since I had any dealing with benefits but my understanding is that PIP is a benefit that is paid based on how the condition impacts on you not because of the condition itself. So based on that I would think if you are currently ineligible (which I doubt) you may become eligible later if the impact of the condition gets worse. So I wouldn't think you would be precluded for another assessment while you are eligible age wise

Bri

User
Posted Friday, February 10, 2017 10:26:36 PM(UTC)

Good to hear that the diabetes is settling a bit. I was diagnosed with IBS this year and bizarrely, as soon as I got a diagnosis it got better! When the doctor told me that it was IBS I said "but that isn't a real thing is it - it's for nervy people" which he wasn't very pleased about and led to a lecture about the delicately balanced inner workings of our digestive system.

As for the PIP application, you are right at the top of the age range for eligibility so if you apply and fail, you would soon be too old to get it anyway (ergo what have you got to lose?)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Friday, February 10, 2017 10:31:01 PM(UTC)

Didn't realise you were 64 Paul. So age-wise you probably will only have this one shot

Bri

User
Posted Friday, February 10, 2017 10:38:28 PM(UTC)

PS have any of your Hong Kong trips been more than 4 weeks? That might preclude you from PIP :-(

If it is just about getting a scooter to zip around on, you can probably have Stan's - it was bought and then never used and I think it is still sitting in the garage. Might have to get a new battery? If you think it might help I will check with m-i-l

Also, I met a friend of Joe's on some training but have forgotten his name :-(

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Saturday, February 11, 2017 8:58:03 PM(UTC)
Paul
pleased to hear you are coming through the worst of things. Insulin isn't that bad and it does give really good control. The steroids would have pushed your HBa1c up a bit.
As for PIP and benefits please get help from either your own local hospice team or Macmillan. As far as I understood anyone with a T4 terminal diagnosis under state retirement age of 65 is eligible for PIP . Most Oncology consultants will help in the fast tracking process by signing off a special application.. You can only get it approved pre 65 though even though once you have it you only have to requalify every 3 years (I think ?) Mick managed to get it literally days before his 65th birthday thanks to the St Barnabas hospice benefits advisory service.
Knowing you and your mobility issues I would say you would qualify for the top level payment which would give you a full motability allowance, a blue badge etc. Once Mick's was approved they back dated it about 4 months.
It is not means tested. Lots of Men on this forum get the full benefit even though they have outlived the 6 - 12 month prognosis that is supposed to be the qualifying criteria.

I always viewed it that Mick would not get to draw his state pension for very long and this would go some way to making amends for that. There again I really didn't expect him to only get it for 8 months.

Im sure one of those that get it will comment soon
xxx
Mo
User
Posted Saturday, February 11, 2017 10:21:42 PM(UTC)
Lovely to hear from you Paul,
It does all sound positive and long may that continue glad to hear the diabetes is behaving but sorry about your early Xmas present that wasn't very festive . 😆
Brussel sprouts would have been just as effective 😂
I can just see you zipping around in Stans scooter if that doesn't work out I have got a very descent ride on that's just as good. 🤗

BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted Saturday, February 11, 2017 10:24:43 PM(UTC)

I think they have tightened it up again for the terminal illness version Mo - specialist must confirm that there is a life expectancy of less than 6 months. Happily for all of us, I dont think Yorkhull is there :-)

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Saturday, February 11, 2017 10:26:37 PM(UTC)

Paul playing on your ride-on ... now that's an image Julie!

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Sunday, February 12, 2017 12:08:55 AM(UTC)

Thanks for all the responses very helpful. Been out tonight celebrating five years survival with my children at the same restaurant we have been to every year since that first shocking realisation. I said we would go back every year to mark survival even if it was only 2/3 years. It's over an hour to get to but tonight was our sixth visit and another good night. I understood the terminal illness bit re PIP and the 6 month timescale which Lyn I hope u r right will not happen for a little time yet. But I am 65 in May and wondered whether I would get a favourable assessment. I already have a blue badge. Anyway I shall keep thinking. thanks for all the info.

User
Posted Sunday, February 12, 2017 7:09:20 PM(UTC)

Paul, I admire your positive thinking, which I've always advocated as half the battle in combating PCa. I think going back to the same place each year for a celebration is a great idea. However, I am convinced you'll be doing this first least another five years, based on my own experience, probably rather more. I remember my consultant saying over nine years ago "live every day as though it may be your last and enjoy life". With my numbers and the treatments available then, he didn't expect me to survive. But I'm doing better than that, as you are. Keep at it, mate, and don't let the b*****s get you down. If I were you, I would avoid all the mobility props as long as possible. Independence is greatly to be preferred to dependence, be it on the state or relatives or anyone else.

Keep at it, old son.

AC (73 and counting)

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User
Posted Tuesday, March 14, 2017 12:25:22 PM(UTC)

So back at oncologist for three monthly check up. Well PSA remains under control, no drop but more or less the same at 3.90. We then had a long discussion about my general well-being. She had asked me how I felt and said I looked well so I had to point out it was early morning and underneath I was more like a swan, looking good above water but paddling like mad to keep going. This discussion was partly to alert them to my PIP application. (Yes decided to submit an application and see where it gets me, given I'm nearly 65 and you have to submit whilst 64). My mobility is really not good, poor really and I think it's a reasonable application but I will keep you posted.

So we discussed my right leg and though she was not inclined towards a bone scan, arguing the PSA was strongly suggesting no great activity but she sent me for x-rays to check bone thinning DN11 to see what is going on on my right leg, no outcomes from that yet. Has reduced my steroid dose, concerns about side effects and I think will be moving onto enzo over the summer, hinted at anyway. Hope that reduced dose might have positive impact on my well-being whilst not bringing back symptoms which have been held steady. It's a year since I started my dexa journey and it's been a good one.

So quite a good conversation and I hope I did enough for her to support my PIP application. A year of PSA reductions is the bottom line good news and I can take that.

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User
Posted Tuesday, March 14, 2017 12:36:06 PM(UTC)
Long may you drink from the cup of positivity Paul.

Bazza
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
User
Posted Tuesday, March 14, 2017 12:41:07 PM(UTC)

Good to hear this news...stability is a wonderful option when the roller-coaster beckons. Great that Dexa has done its job so well, and good that the steroids are being reduced. Here's to a successful PIP and wild times on the scooter (maybe get a Tony the Tiger tail to go on the aerial and a Parka jacket with the pretend fur round the hood).

Take care.

Eleanor

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User
Posted Tuesday, March 14, 2017 1:16:11 PM(UTC)
Hi Paul,

My wife had her PIP assessment 3 weeks ago and we're awaiting the results. She was on lifetime DLA but that's changed now. We didn't see this website beforehand but it may be helpful:

https://www.citizensadvi...p-claim/your-assessment/

Arthur
User
Posted Tuesday, March 14, 2017 2:13:39 PM(UTC)
Paul

Here's a brilliant advice piece on YourAble how to present the best possible PIP application.

http://www.youreable.com...ory-and-some-reflections

Bazza
I am Spartacus - with the strength of iron, a will of steel and the fight to give this disease a real run for its money.
User
Posted Tuesday, March 14, 2017 4:21:19 PM(UTC)

Glad life is treating you kindly Paul, even if you are paddling madly!
Good luck with your PIP application. Hope you get a good result

We can't control the winds - but we can adjust our sails
User
Posted Tuesday, March 14, 2017 5:38:53 PM(UTC)

Maintained PSA - wow and double wow. You are another example of how predictions can be wildly wrong; am looking forward to pogo-ing around with you soon x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


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User
Posted Tuesday, March 14, 2017 7:46:18 PM(UTC)

Great to hear the PSA is holding steady Paul. I'm sure she will support you with the PIP application

We shall have to arrange breakfast to celebrate

Bri

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User
Posted Tuesday, March 14, 2017 8:33:49 PM(UTC)
Po-going that has really made me smile actually scrap the smile that has made me laugh out loud or as the new term for youngsters is LOL . I remember it well .😄
Sorry Paul I can't type as still laughing .

Alright I have sorted myself so brilliant that the PSA is holding steady that is music to my ears I do have worries in the reduction in Dexa but I am sure you will sort it if it needs to go up a touch.

Regarding the pip application I don't think it is wise that you mention that you can Po- Go round the block. 😉
Love you loads Paul you know that and just taking a moment to be serious you deserve a helping hand and I know how much you have struggled with walking etc .
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
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User
Posted Tuesday, March 14, 2017 9:38:51 PM(UTC)
Great news Paul so pleased for you

Not sure what Lyn is up to I thought it was a nice sedate evening with good company not a punk revival

Look forward to seeing you soon
Si
Don't deny the diagnosis; try to defy the verdict
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User
Posted Tuesday, March 14, 2017 10:03:17 PM(UTC)

It says on the PIP form, how many times have you a) pogoed in the last year b) pogoed with Lyn in the last year c) can you pogo on a mobility scooter. I did not know how to answer until Lyn and my crazy wonderful friends got involved. Thanks for your continued support it means a lot.

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User
Posted Wednesday, March 15, 2017 12:30:38 AM(UTC)
Hi Paul,

Really pleased that the PSA is being controlled so well.

Good Luck with the PIP form, I know what a nightmare it can be filling out anything like that.

Take care of yourself and look forward to the new cricket season.

Steve
User
Posted Wednesday, March 15, 2017 9:10:00 AM(UTC)
P

Good news on the PSA and I hope your​ PIP is approved.

Thanks Chris
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User
Posted Wednesday, March 15, 2017 4:48:49 PM(UTC)

Hi Paul,

Congratulations on your continued PCa stabilty .

You ARE another great example of how grim prognoses and pessimistic predictions are not written in stone.

Thank you for cheering up all us wannabe old codgers (well, you're nearly 65 and I'm nearly 66, and I'm busy spreading fake news that mid-60s is the 'new mid-30s').


Two reasons for us to be cheerful:

1) Such an encouraging post.
2) The way the thread became hilariously Pythonesque!


All the best,

See you at The Mill in 107 days or so,

George

User
Posted Tuesday, April 4, 2017 12:42:20 PM(UTC)

Just a quick update. Decided to go into the oncology clinic this morning as not been feeling too good since reduction in steroid dosage. No problem with seeing me despite a typically busy NHS clinic and waited less than hour. Seen by the main man who was very helpful. Dexa dosage to stay the same but put on paracetamol and a stronger pain killer - oxynorn - if needed. Also anti-sickness if needed. We discussed the fact that it's nearly two years since a bone scan and one was immediately ordered with a ct scan too. So pleased with that as can double check that the PSA improvements are reflected in the scans. In the meantime hopefully can keep the pain in control and get some energy back.

PIP form went in last week just waiting for assessment now. The way I feel this week could do with assessment now!

So hopefully I will get used to my new normal and find more energy in the weeks ahead.

User
Posted Tuesday, April 4, 2017 4:32:28 PM(UTC)

Sorry you've been feeling under the weather Paul (understatement of the year I expect eh!) and I hope seeing the consultant and obtaining pain relief will help you get your mojo back !!

 

Thinking of you

We can't control the winds - but we can adjust our sails
User
Posted Wednesday, April 5, 2017 12:52:54 AM(UTC)
So sorry to read this Paul but not exactly surprised I have always found that once on the steroid journey it is very hard to then reduce . Trevor has remained on the same dose since he started them . Of course I understand that GPS would normally like to reduce them due to long term side affects but long term being the operative wording and some of us don't have the luxury of long term.
I can't believe that it is two years since you have been scanned, I have fingers and toes crossed for that.
Trevor's pain has been really well controlled with the slow release morphine 2 x daily and the paracetamol 4 hourly .
Loving your blog 💗
BFN
Julie X
NEVER LAUGH AT A LIVE DRAGON
User
Posted Wednesday, April 5, 2017 7:09:05 AM(UTC)

Your inbox is full Paul. Can not send you any message.

Sorry to hear that you are in difficulty, hope it gets sorted.

atb

dave

Be content with your choice of treatment at the time you make it. Then make the best of every minute, every hour, every day.
User
Posted Wednesday, April 5, 2017 1:42:58 PM(UTC)

Hi Paul

Sorry that things are a tough for you Paul. Pain is hard to cope with in its own right but, if my OH's experience is anything to go by, also tends to increase anxiety and tiredness and massively undermines quality of life. That said the new pain management regime - slow release MST and four lots of paracetamol daily - is working really well and he's got both his mobility and his confidence back. Do so hope the same is true for you. And fingers crossed for the PIP.

Take care.

Eleanor

x

User
Posted Wednesday, April 5, 2017 4:44:31 PM(UTC)

Did you tell them you had been pogo-ing with me?

You perhaps tried to do a bit too much over the last couple of weeks at the wrong time - increased activity, stress and reduction in steroids may not be the ideal combination my friend :-/

Fingers crossed on the PIP application x

"Life can only be understood backwards; but it must be lived forwards." Soren Kierkegaard


User
Posted Wednesday, April 5, 2017 6:02:19 PM(UTC)

Thanks all sorry for not responding sooner been out all day today. I'll clear some space in my inbox Dave and I do hope to reduce the pain, felt better today and that was only on paracetamol.

Lyn of course you are right has been a hectic time but try to keep busy if I can. At least I have tried with Pip, I had a whole section on pogoing! By the why why didn't u pop in on your way to my son's school. He said you were very good.

One concern Julie they have with the steroids is diabetes control and that has been difficult of late. I suspect if/when I move onto insulin this will help control as even if I know my blood sugars are high I cannot adjust with tablets. This is why enzo is next, so I don't have to take high dose steroid. See what the scans bring. Be interesting if they ever give me chemo regarding steroids. But not yet I think.

Thanks Eleanor pain management is always a pain! I've had a good year under the dexa as the year previous was very heavy going pain wise. I suppose I fear it going back to those levels and beyond. But not felt bad today and been busy so let's see if I get a reaction tomorrow.

User
Posted Wednesday, April 5, 2017 7:04:38 PM(UTC)
Paul

Sorry to hear of your latest issues, but I am sure your tenacity and resolve will see you through. Take care.

Thanks Chris
User
Posted Wednesday, April 5, 2017 7:42:06 PM(UTC)

Paul,

Sorry to hear of your latest issues , hoping things get better and that you are ok for the 1st June

 

Regards Barry

User
Posted Wednesday, April 5, 2017 8:37:01 PM(UTC)

Page turning trouble again, first effort

User
Posted Wednesday, April 5, 2017 8:37:23 PM(UTC)

Page turning trouble, the sequel

User
Posted Wednesday, April 5, 2017 8:38:09 PM(UTC)

Son of page turning trouble

User
Posted Wednesday, April 5, 2017 8:38:52 PM(UTC)

Page turning trouble the danish edition

 
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